NICU, Day 13: September 30, 2009

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Overall, today was a good day.

Surgeon report: Luke is continuing to recover well, it’s just a slow process. His stoma (where the bowel was brought to the surface of his belly) is healing well and looks “beefy red,” a term the nurses use. We put his bag on it today so for the next couple of months, his stool will come out there. After a few months, Dr. M will go back in and surgically reattach his bowel inside the belly. Sorry if that’s TMI 🙂

Cardiologist report: Dr. Shaffer spoke with us about the implications and corrective options for Luke’s VSD and PDA (two holes in the bottom two chambers and in the lower ventricles). The PDA typically closes the first few days of life in infants and there’s a chance Luke’s could still close. If not, it’s a surgery that can be done with a catheter. The VSD could also be closed surgically, either via cath or open heart, but it’s still too premature to even make a plan of action on either. We first need to get Luke recovered from his major bowel surgery and then we can tackle his ticker. We’ll do another echo next week and go from there.

Neo report: Overall, Dr. Michael is very happy with Luke’s progress. His creatnine is down to .3 (exactly where we want it right now) which indicates that his two kidneys are keeping pace with his growth and he’s happy with his post-op films. We discussed getting a PICC line later today (which we did about 5pm). PICC is a peripheral intravenous central catheter. Luke’s is in his left leg. It took them nearly four hours to get it in – mostly looking during that time, not sticking. But still. I had to leave the room. Note to self: If your child ever needs a PICC line, leave the room.

He’s still on his pain meds and has found a happy place with his new-found love, Verset. I’m still trying to figure out how to score some of that myself.

The kids came up today and we decorated Luke’s door – each NICU baby has his/her own room with a sliding door, and the staff encouraged us to trick it out. Trick we did. We didn’t allow the kids in the NICU – too many germy hands, too many tubes coming out of Luke. But, they had a grand time making his room a little more like home.

Tonight I just sat in Luke’s room and enjoyed watching him sleep. I can’t even begin to tell you how difficult it is to look at him and not be able to love and hold him. As parents, I think we take that for granted sometimes. I know the day will come soon, but for this mom, it’s not soon enough. Mostly, I long to see his sweet eyes looking at me curiously, his milk drunk smile, his sweet chest moving up and down, his little hand grabbing mine.

We know that he has a long road ahead. Luke is one sick kiddo. But we’re comforted by your prayers and help. And, we are thankful for the time we have with him now. Man, are we in love.

Kathryn,How much we are thinking of you. I've passed along Luke's story (no identifying info) to several groups here that are praying for you. One has a former NICU mom whose son had both an ostomy bag/NEC surgery and the exact same heart conditions. She asked that I tell you his outcome was very positive, despite the difficult road. All are now repaired. I realize this is likely such little comfort right now.

How much we feel for your not being able to hold him. Nothing can describe that feeling…so many memories of our own ICU journey. I promise even as you ache to hold him, he feels you there without a single touch. Praying for time to pass quickly and healing to continue.

HOWDY and welcome to life at Team Whitaker where I share life as it happens: big families, carpool, Catholicism,Texas Aggies, prematurity, DIY/organizing projects, sanity checks and the occasional glass of wine at 10am. You get real Kathryn. Unedited, honest and a little sassy. It's a Texas-sized honor to have you here! Contact me at [email protected]{Read More}